Commentary: Minnesota Legislature plans to violate privacy rights of cancer patients

It's time to shut down warrantless surveillance of cancer patients.

The Minnesota State Capitol building in St. Paul, Minn. (Department of Administration/Flickr)

The news that you or your loved one has cancer is one of the most devastating diagnoses a person can receive. Despite the available treatments, cancer is still a journey of long, sleepless nights, lonely hospital rooms, and the constant fear of worst-case scenarios. Now, Minnesota legislators would like to add invasion of private medical records to the journey.

Legislation to permit nationwide sharing of names, addresses, diagnoses, treatments, and other personal information of every Minnesota cancer patient is rapidly advancing in the Minnesota House. This private data, which has long been held securely within Minnesota borders, could soon be available to government officials in every state and the federal government.

Originally passed in committee as HF 3871, and authored by Rep. Kelly Morrison, DFL-Deephaven, this legislation is now moving forward as part of HF 4706, the omnibus health and human services bill in the House.

Morrison’s language repeals the only privacy protection patients have, the physician consent requirement. Currently, health officials who want to talk to cancer patients or their family members must first seek permission from the patient’s practitioner. HF 4706 would allow the Minnesota Department of Health (MDH) to contact the patient or family after merely notifying the attending physician, advanced practice registered nurse, or surgeon. These practitioners would no longer be able to prevent the intrusion of government agencies and contractors into the lives of their patients.

Furthermore, it would permit data collected on cancer patients, including names and other personally identifiable information, to be shared with 49 other states. Today, because of Minnesota’s strong medical privacy laws, Minnesota cancer patients are the only patients whose data is not available nationwide. However, Morrison’s language says, “Information containing personal identifiers collected by the cancer reporting system may be provided to the statewide cancer registry of other states … ”

Patient data could also be shared with the CDC: “Information, excluding direct identifiers such as name, Social Security number, telephone number, and street address … may be provided to the Centers for Disease Control and Prevention’s National Program of Cancer Registries and the National Cancer Institute’s Surveillance, Epidemiology, and End Results Program registry.”

Finally, the language does not specify how long patient data may be collected or retained by Minnesota, other states, or the federal government. Expect ongoing surveillance of cancer patients and in-depth analysis of their data.

Cancer surveillance is not new. Under state law (M.S. 144.671) and regulations (M.R. 4606), Minnesota doctors and hospitals have been sending this data to the Minnesota Cancer Surveillance System without patient consent since 1988. Thus, most patients don’t know. Despite constitutional rights against warrantless government search and seizure of persons, houses, papers, and effects, state legislators have long deemed cancer patients to be without these rights.

It doesn’t have to be this way. The Minnesota Senate can stop the Morrison language in the House bill by simply refusing to accept it. They could also add patient consent requirements that prohibit patient data from entering or leaving the Minnesota Cancer Surveillance System without written permission from the patient.

Everyone would like to find a cure for cancer, but this worthy goal does not justify the violation of patient and privacy rights. Cancer patients must be allowed to decide whether to divulge personal information about their illness and treatment to the government — on their own terms and without undue pressure from state health officials. It’s time to shut down warrantless surveillance of cancer patients.